Hello Scot and Helen... I'm a little late coming to the table here but I've been away from my computer for a couple of days. First, welcome to the forum and I so related to your comment about needing to be with people in similar straits as yourself. Like you, a BC diagnosis totally hit me out of the blue.
The local uro had me come to his office for my path report after the TURBT, stated in a very detached way that I had a "rare" type of tumor, he was referring me to Vanderbilt, and that he was not sure what they would do... maybe remove my bladder, or just maybe, they could do a partial cystectomy.
I'm watching his mouth move but really not comprehending the words. In my head, I'm thinking... 'WHAT????' My sister had offered to go with me but I had declined her offer because I wanted a chance to hear and react to the report by myself (always been kinda a semi-loner personality). I can't say I even remember driving home.
Just over three weeks later, I had my surgery at Vanderbilt (partial cystectomy) which went very well and I've been clear since (knock on wood). Even though I had very supportive family and friends, I never felt so alone and isolated those first several months. Until that path report, I had never even heard any of those "cysto" words like cystoscope and cystectomy. I didn't know anyone with bladder cancer and kept reading dismal statistics for my type of cancer. I only found this site eight months later and I feel like it saved my emotional and mental life. Being among "people like me" took away the dark cloud that had hovered over me all that time.
As far as CCA, no one is faulting your decision to go there. Their commercials are so compelling it makes you want to go there even if you don't have cancer! But I do think you would be fortunate to be able to see Dr. Lamm. A recent study linked better outcomes with the doctor you see for treatment because all uro's are not experts on bladder cancer.
One more thought... try not to be angry at your "young, bright" urologist. Yes, he could have handled it better certainly. Maybe being young, he had not had to tell very many patients they have cancer, or he got called away momentarily for something else in the office, or any other number of reasons. Harboring anger is not healthy, nor does it change the results of your TURBT. You need to direct that anger at the cancer and do everything you can to rid your body of it. Consulting with Dr. Lamm would be a good step in that direction.
It's rather amusing that I accompanied a 74-year-old friend to an appointment a few months back with the same "detached" uro that did my TURBT. She was having some bladder "issues" unrelated to any kind of cancer. He was joking and friendly and so unlike they way he was having to deliver devastating news to me. It's a hard thing for them to do so maybe your guy just wasn't "there" yet.
(Sorry this post is soooo long.) -Catherine